Reciprocal. 50/50. Equal. You name it, chronic illness changes it. So many folks I know with chronic illnesses doubt what they have to offer in relationships when they can’t “pull their own weight.” I face this shame in mainstream circles, in queer counter-cultures, and battle against internalizing it. We need a new way to frame give and take in committed relationships that’s not alienating for folks with chronic illness.
Before I got sick my wife and I were division of labour superstars. We had this whole
morning routine where I would begin prepping smoothies and coffee while she showered and she would finish making breakfast while I showered and then we’d both sit down to eat together. Now I am in mind-numbing pain if I don’t get way more sleep than an adult who is well would ever need. I wake up groggy, fatigued, and nauseous but still need to organize over 60 meds for my day (naturopathic, homeopathic, and allopathic– it takes everything with Lyme). Doing yoga first thing will significantly reduce my pain. Would I be able to eat, let alone make breakfast, in the midst of this? Not bloody likely. But my wife leaves me a nutrient-rich, protein-filled, anti-inflammatory smoothie every morning. She does more than half the chores now. She makes dinner more often than not. She runs more errands.
I’ve had a lot of angst about it. It was, and continues to be, hard not to see myself as a drain on her energy and feel bad about the multiplicity of costs my illness requires. Comments people made can illuminate myths that add to the difficulty I faced. Here are just a couple of examples:
Comment: “Poor Colleen! She does too much.”
Myth: Partners of people with chronic illnesses should be pitied.
If you think we had too much on our plates, you’re right! Folks saying “poor Colleen” weren’t offering to come help us with dishes or pick up some meds from the pharmacy, they were just talking about her with a sense of pity. This, of course, didn’t help either of us and just made it harder for me to not feel like a burden. At one point I got sassy and started answering “how is Colleen,” when asked with a pitying tone with “well, she married her soulmate this year so that’s pretty damn great!”
Comment: “Oh wow, so then you were supporting her !”
Myth: People with Chronic Illnesses Don’t give Support.
My wife is steadfast and routine oriented. My personality (illness notwithstanding) is such that I’m generally up for a spontaneous adventure. One time we had camping plans go awry: the campground on the island we’d just sailed to was closed for the season. I got us back to the ferry terminal where there was a connecting sailing to another island. I pushed us to switch gears quickly and while it stressed her out at first, she was then relieved and happy that we had a lovely place to go. I know her well and know when this will be okay. When I recounted this story to a friend, she said, “Oh wow, so then you were supporting her !” Hey folks, this sentiment rests on seeing folks with disabilities as sponges who take but do not give. That’s a myth.
To counter this, my wife and I brainstormed ways that I support her that are not based on mobility and energy. Here’s a partial list:
- I hold her hand when she is sad
- I snuggle with her every night
- I listen to her process work and life stress
- I inspire us to meditate together
- I have creative ideas for low-energy dates
- I am reassuring through upheaval
- I’m a problem-solver, able to coach us toward solutions
- I am a silly-head and make her laugh by being my weirdo self
I have a PhD in Gender Studies and do not want to perpetuate unequal partnerships. Don’t get me wrong, I’m not advocating that folks let themselves off the hook and hang out playing video games while their partner makes them dinner if they could get up and help out. I’m not excusing the person who has a drink with their buddies while their spouse does more than their share of the housework.
I’m talking about replacing the notion of 50/50 with something else: that everyone in a household does 100% of what they can do. When I was at my most sick, 100% of what I could do was to have help getting to the bathroom and back or sitting up so that I could eat food that was brought to me. I still do 100% of what I am able to do and so does my wife. And guess what? Our relationship is still mutually-supportive regardless of dish-washing count.
I encourage you to reframe “giving” from transactional scales to wholehearted engagement.
Hands In The Dirt 
Omg. Yes. Seriously. Most of this for me is internal but I often feel like others see it too. Thank you for putting words to it.
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Thanks for this. As a long term tired (sixteen years cfs) single person I avoid relationship as I fear I won’t have enough to contribute. I love the give 100% of what you can idea. Reprogramming head now …
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Thank you for commenting! That’s exactly why I wrote the piece… so glad it was meaningful to you.
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When I got Lyme, much more shifted to my husband. And there are things he’s given up because of my celiac. I know I’m lucky that he’s supportive, because there are partners who aren’t, but we promised in sickness or health. I like how you frame it as 100% of what we can do.
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I’ve never understood the balance sheet approach to relationships. A young dad approached me once to ask what I thought of his wife counting the hours a child was sleeping as part of her hours of parenting. I was incredulous! We both live with chronic disease, but it doesn’t define us or our relationship. There were no guarantees that either of us would be healthy throughout our married life. We committed to living our lives together, come what may. Ups and downs, daily struggles and celebrations, for 44 years, doing our best in any given moment.
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Well, if it’s a new baby and it needs fed every two hours, I would call that work. If it’s an older child who just wakes occasionally (as in, nightly), perhaps her hyperbole was a way of suggesting that maybe her husband should get his butt out of bed and take his kid to the bathroom every other night or so.
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I’m glad that you and your wife are able to support each other. I’ve always said the same thing you’re saying here: people do what they can do, they give what they can give. As long as everyone is doing that, there is no problem, and there shouldn’t be a scorecard no matter what.
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Omg. This. My partner (also Colleen!) Is amazing and understands my days. I know she gets frustrated sometimes, we all do, but she is always there. I was diagnosed with fibro at 16 and subsequently ‘aquired’ trauma caused mental illnesses that, after almost five years, I’m finally getting the proper treatment and help with. She’s the one person that I know 100% has my back. But when she got hurt at work last year (RN, she now has days where she cannot use her left hand), I was the reason she pushed back at her employers about workman’s comp when something wasn’t right and they weren’t doing enough. People don’t see the days I tie her shoes, get her meds, ‘release’ her hand, or know that I researched(or how long it took) her work phone to find the proper headset that she needed. Her and I know how much light each other needs, and everyone else is just looking in through dirty windows. She’s my everything.
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I love your last line here… You guys know how much light you need and everyone else is just looking through dirty windows. That’s powerful.
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Thank you for the excellent article!
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Thanks for reading! It’s lovely to see how it’s speaking to people.
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This is brilliant. Thank you so much for sharing this perspective.
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Very well said. I struggle with great guilt not being able to work, having had multiple surgeries, watching my hubby work long hours. But I h always done as much as I could and I love your statement “each gives 100% of what they can “.
I’m just now after 18 years finding I d have worth and contribute in the best ways I am able .
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I like the attitude you’re trying to find in your new relationship, but it’s undercut by one of your points:
“I have a PhD in Gender Studies and do not want to perpetuate unequal partnerships. Don’t get me wrong, I’m not advocating that folks let themselves off the hook and hang out playing video games while their partner makes them dinner if they could get up and help out.”
So a big undercurrent in your article is about how people are judging your relationship without knowing the intimate details of what you and your partner share. But then in that sentence you say, “But don’t worry, I spent a lot of time and energy on a degree, and I’m still more than ready to judge other people’s relationships if they don’t fit my definition of fair.” So… pretty hypocritical.
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That’s a different take than what I was going for. It’s not about judging but about clarifying that I am not excusing folks willingly leaving their partners with more work when they are capable of doing more themselves. I want to stress the difference between doing 100% of what we can and disengaging in our relationships. I mention my PhD, not to judge, but as an illustration of the extent to which a commitment to equity has shaped my life. There are relationships where one person is giving their all and the other is doing far more taking and I didn’t want this post to be misinterpreted as me advocating that this either never happens or is fine.
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Thank you for your thoughtful response. But I think I was unclear with my original post. In your response you said, “There are relationships where one person is giving their all and the other is doing far more taking and I didn’t want this post to be misinterpreted as me advocating that this either never happens or is fine.” Except how is that judgement made? It’s by someone from the outside quantifying time and effort, and saying person A is doing much more than person B, and frankly, judging that. Which is exactly the judgment you bristle against from people outside your relationship, thinking that your relationship is uneven because your partner does all the typical forms of work.
I’m in a very gender traditional relationship. I do much of the housework, he makes much of the money. I’ll do dishes while he does play video games to unwind. I suspect very strongly that under your caveat, my relationship would fall under the category of “the other is doing far more taking.” My boyfriend came to me one day, asking if that imbalance bothered me. And I asked him if he counted all the times I come to him, asking to talk about something that I’m interested in or bothering me and he’ll ask great questions and talk to me for however long I want to talk. I asked him if he clocked those hours. And he said of course not. And I told him that he really doesn’t do that to me. He doesn’t really every stop my day in that way. And neither is a bad thing, it’s just who we are.
I think I was a little disappointed that while I was rooting for you in the article to defend the relationship you share with your partner against the judgments of other people, that comment I pointed out didn’t seem to engender any humility in you to question how difficult it is to judge the intimate details of another couple’s relationship. That maybe it’s really difficult to judge who is doing “not enough.”
But again, thanks for the insightful post and comment.
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I don’t believe that my caveat was for your relationship. Not if you are in a mutually supportive relationship that works for both of you! The example I gave does not mean that anytime anyone plays video games while a partner does chores then their relationship is automatically one-sided. Part of the downfall of any example is that their will be exceptions. However, there are relationships that are one sided, where one person does all or most of the work while another is disengaged. I do stand by needing to clarify that most post is not advocating that. Also, in my discussion in this post, I am not just talking about people who don’t know details about my relationship, I am talking about a cultural trend whereby people with disabilities are not seen as contributing partners–even by close friends and families.
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I was nearly bedridden from Fibromyalgia/Chronic Fatigue for a decade before finding something that helped. I am still in pain/fatigue over 50% of the time. After doing so much for my family over the years preceeding my disability, I crashed and my husband has taken care of me, physically, emotionally, and financially. I have felt so guilty for not doing my “share.” I just can’t. Thank you for this article. Reading it reminded me that I give 100% of what I can.
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I love most of this, and the comments of other “sick singles” resonate with me deeply. The myths are widespread and bear even more weight down on a lot of us. I struggle with relationships largely because of my limiting disabilities. Part of it is other people – I’ve been sick and disabled long enough to have realized that a great many people who would have considered me as a mate before now don’t, and it’s because of the rampant ableism involved in acceptable desirability in our society. Liking a “healthy glow” is the ideal, or at least an acceptable “preference”; liking a girl with a prosthetic is unacceptable or even a “fetish”. Add that to the idea that disabled / sick folks are just a drain, and we are eliminated from the relationship pool.
The worst part, for me, isn’t even other people’s judgements of my worth, it’s my own. We are raised surrounded by this atmospheric ableism, and so becoming sick hits a lot of us hard. I suspect that, whether you realize it or not, part of the reason you wrote this article is a reflection of that same deeply personal, deeply shameful, indoctrinated ableism that makes even sick people judge ourselves unworthy *and* put ourselves on a hierarchy of “I may be xxxx sick, but I’m not xxx sick.” We write about things like our worth in relationships and make little lists of the reasons we ARE worthy and the things we CAN do, and we do it because, on some level, we’re trying to justify our lives, our worth, our very existence to abled people *and to ourselves*.
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This is a great article- and it really hit home with me. My husband suffered sudden-onset liver failure approx 5 1/2 years ago. He was very lucky- got a full transplant and has made miraculous recovery… HOWEVER he will never be the same. He will never have the same energy levels and physical strength levels he once did. As such, I am the primary breadwinner – and our live has shifted dramatically. It has been hard on both of us, but psychologically, the hardest on him. Becuase he sometimes feels like a burden- certainly financially – and that really affects him and his mental state. The point you made about refframing the idea of 50/50 to each person giving 100% of what they can -Wow! A lightbulb just popped over my head when i read that! I will be sharing your article with him tonight – Its truly a wonderful insight. I thank you.
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So glad it was meaningful!
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My husband has a kidney transplant. I remember when we had been together about a year and my beloved grandmother died. He came to the funeral. He was there for me. I think it was a key moment for us because he realized he could be there for me too. Sometimes, his health needs do take precedence. But he can be there for me too and he needed to experience that.
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This is such a lovely and important article and can go for those with depression/anxiety/panic disorders as well. Looking at relationships as give and take leads to a need for a checks and balances system. My partner makes more money than I do and sometimes has to cover things that I consider *my* expenses. In a lifelong relationship, these things ebb and flow over time. Is she sitting there making notes about the times she has financially supported me – no, nor would I sit there and make notes about the times I’ve been there for her when she was upset, or came to her aid when her car broke down. Thank you so much for this important insight.
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I get where you’re coming from and it’s a lovely point, but the ‘100% of what you can give’ idea leaves a lot of room for the not-ill (or not as ill) person to feel like they’re crap.
My wife is chronically depressed and physically limited. Since i’m ‘only’ depressed and my means of coping is maniacal work and a driving sense of self hatred, I manage to ‘get things done’, including taking care of her. My 100% requires me to do all the chores, handle the finances, and work 60 hours a week. So even though I understand that her 100% is feeding the cat and taking a shower, I still feel overwhelmed, exhausted, and like i’m carrying a burden alone.
And then if course since I can’t take joy in this work, I feel even more like shit and like i’m a terrible person for wishing my partner could take some of the responsibility from me.
Sometimes 100% aren’t equal.
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No, it really often isn’t equal. I could (and likely will) write a whole other piece about how two isn’t enough and the need for way more community support than folks with chronic illness often have. Your situation sounds hard.
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This was so helpful to me in feeling better about *myself* (RA and fibro, and in a flare at the moment), since I worry that I’m a bother to my partner. He doesn’t see it that way. I think it’s because we DO give 100% of what we are able to on a daily basis, though I’d never thought of it that way before. Thank you SO SO MUCH!!
Sending some healing light your way.
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I really liked part of this, and felt bummed by part of it.
It got me very excited to make a list of all the things I do for my husband that he no longer has to do, because he has me. He hates shopping, for example. I’m an eBay hound, keep track of all his measurements, and I’m good at stretching our budget and pouncing on the right auction. He likes quirky, flamboyant, sturdy, comfortable clothes–overalls, wild Hawaiian shirts, knickers with knee buckles. I figured a lot of this out for him, and have the patience to watch for and snap those things up. He gets surprise clothes he’s always thrilled about for Christmas and birthday, and extras when something wears out (which is often).
If I wasn’t around, clothing would be a lot more hassle and a lot less fun for him. I think there are lots of things like that.
The part I was bummed about was the 100%. I have fibromyalgia and anxiety. I have to walk a tightrope with timing, types and amounts of meds, food, sleep exercise and pure chance to keep my body from swerving wildly into either being so wired that I just can’t cope at all, or in too much pain and/or exhausted/sluggish/doped up to be able to function. I’m always asking: how long will I get to have this energy? how much can I get done without overexerting and ruining tomorrow and possibly longer? Is this good energy or about to become anxiety? What did I miscalculate that made this pain happen? How long will it last? Should I try to push through it to finish a task? Is it “real” body-isn’t-repairing-itself pain, or “fake” stuck-in-a-cycle-of-sensation pain that I can drug myself through and not be the worse for later?
The problem with the 100% applied to that is that all of that calculation, and the frequency with which it doesn’t pan out, is emotionally exhausting. There are days when I don’t hurt when I just can’t muster the motivation to try to do anything. There are tasks I just can’t get motivated for after getting motivated 8 times in the last two weeks and never being able to do it. Or I may be able to be optimistic and at peace on a day I have pain–and then the next day? I spent all fucking day yesterday reciting like a mantra how none of this mattered in the big picture and now I’m supposed to care? I can’t flip on a dime! Likewise, being excited for tomorrow and then being disappointed when my body can do NOTHING, for no discernible cause, when I’ve carefully hoarded energy and deployed the right meds and missed something else I wanted to do, and for NOTHING can bring me to the brink of despair and strand me there even after the pain is gone.
So I don’t give 100% a lot of the time. A lot of the time when I do it’s spinning my wheels and accomplishes nothing. I need motivation to be able to function successfully, and I don’t always have access to it. It feels rotten to be sitting on the couch wasting valuable not-in-pain time because I’m just too emotionally exhausted to care about any of the things that need doing, things that tuning in to is just a reminder that I’ll never get caught up. I feel like I ought to be productive every second I’m not in pain or fatigue or anxiety, but I just can’t manage it.
Do you have any thoughts on this experience? I would appreciate hearing them.
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Thanks for writing! I really relate to a lot of your symptoms… it’s so freaking challenging. I struggle with not knowing what my capacities will be and with getting discouraged too. I know this doesn’t help, but yeah… how do we keep trying when it’s so hit and miss? I think I aim to think of 100% differently than how you have experienced it. I strive to understand that it’s okay to do what is sustainable and compassionate. Pain is exhausting and recuperating is still respecting my capacity. That said, I don’t think there’s a fix-all answer to all of the problematic ways disability and relationships are understood culturally. I have found this model useful for being able to value more how and what I give, but I’m interested in other ways of reconceptualizing reciprocity that also value relationships of/with folks with chronic illness.
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Thank you so much. ❤
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I’m a member of several art journal groups, many of the members use creative practices to manage chronic conditions. This article tied in so well with a conversation some of us were having about contributing to the household/family unit (and a conversation that regularly comes up between my spouse and I) so I shared the link, and it has been met with such relief and love and gratitude, I had to let you know. And I wanted to thank you.
I think it may be getting passed around a bunch more communities as well now.
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Thank you so much for writing and letting me know! It’s so wonderful to hear about this piece making a difference in people’s lives. Your art groups sound like a lovely thing, too!
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Thank you so much for writing this. I often feel like I don’t contribute much to my relationship. I have MS and my fiancé has been great, but it’s hard for me when I can’t do as much as I think I should.
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Love love love this! I run a group on Facebook called spoonie bloggers and vloggers feel free to join if you’d like. I’m glad you found your dish! (And the dish ran away with the spoon) dish=s/o
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Sure! That would be great. I’ve got a FB page for this blog at: The Chronic Yogi.
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Thank you so, so much for this refreshing perspective – this type of perspective comes far and few on the internet! I am dating someone with a chronic illness right now, and considering marriage with him. You’re so right, society places a huge premium on 50/50 in relationships, and I am struggling with that so deeply as I consider marrying. But, he’s such an amazing guy and I want to make it work – I want to be able to do enough for him, without feeling drained myself or without feeling resentful down the line. I am currently grappling with this in pre-marital counseling. I think to myself, “can my partner meet all my needs? My practical needs, such as editing my powerpoint slides for a project, taking care of tasks for me if I’M overwhelmed, running an errand for me without me feeling guilty that I’m using up his limited energy?” I like how you re-framed that each partner gives 100% of what they can – and I truly do believe he gives me his 100%. But I wonder if his 100% will be enough for what I expect/need in a partner. I think what I truly need is to be able to have someone to lean on (yes like the hip hop song, lol)- and not have to always turn to others (community, family)- because isn’t the beauty of a relationship in the duo-aspect of being a team? Granted, he’s able to work part time, is super creative about finding ways to make good money for us (we’re generally traditional with gender roles), and has never been bed-ridden in his 11 years of Lyme, CFS, Adrenal Fatigue, etc. I’d love more than anything to marry him, with peace in my heart that I won’t fall into resentment or more than I bargained for. My heart is open to any advice anyone may have to offer.
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It’s hard to go to others, but I think chronic illness is often bigger than two people. I’ve really needed my friends and my wife and I have really needed her family. Part of my struggle was divesting of shame over this. I hope you find a way to peace with the person you love.
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Thank you.
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Thanks for this article! I have had Rheumatoid Arthritis since I was a kid and I’ve spent most of my life trying to live like I don’t have it. I’ve been lucky and not struggled as much as a lot of people who developed RA as a child, but I still can’t function at the same level as people who don’t have it. And I get angry at myself because of that. My husband is actually always trying to get me to *do less*. So for me it’s not that he is keeping the 50/50 score – it’s me. And I try to do 75/25 as if somehow I can “bank” some of the stuff I’ve done in case I am totally crippled by RA someday. I loved this article and it’s a bit of a wake up call for me. Thanks so much for the reminder and my sympathies for dealing with Lyme. I have a friend who’s had it for 20 years and it’s a tough one. But it sounds like you’re taking care of yourself well and I am inspired to follow suit!
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I love this post. I read it last year, and I never forgot it. I come back to it, and I often share it on support groups when I see someone struggling with “being a burden” on their partner.
It has helped me immensely get through those feelings of being a burden that come with having CFS/ME. Thanks so much for writing out your experience and publishing for others.
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Thank you so much for sharing this with me! It’s so lovely to know that it has had a positive impact in struggles with internalized ableism. Yay!
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